Understanding and Diagnosing VEXAS With the VEXAS Foundation

This podcast was transcribed through a third-party application. Please disregard any misrepresentations.

Brad Caruso:

<silence> Welcome to Civic Warriors, brought to you by Withum. On this podcast, we bring the conversation to you, sharing, engaging stories that motivate and build consensus in the nonprofit community. This podcast is about the innovators, the leaders on the front lines of adversity, guiding lights in the nonprofit industry affecting change. And through their stories, we can all join forces to become civic warriors. Hey Warriors. Welcome to today's episode of Civic Warriors. Brought to you by Withum, I'm your host, Brad Caruso, leader of Withum's not-for-profit practice. Today's guest is Joe Holman, Sustainability and ESG services practice leader here at Withum, uh, and president of VEXAS Foundation. The VEXAS Foundation is a 501(c3) charitable nonprofit organization that aims to improve the lives of patients with VEXAS syndrome. The VEXAS Foundation has three goals, raising awareness, exploring better ways to manage its symptoms, and ultimately discovering pathways to a cure through research, disease awareness, and a greater scientific understanding. The VEXAS Foundation strives to make a positive impact on the lives of people living with VEXAS Syndrome. So, with that said, and we're gonna learn a little bit more about VEXAS itself and the work that Joe's doing. Welcome to the show, Joe.

Joe Holman:

Thank you. Thank you for having me.

Brad Caruso:

So I always like starting out, uh, tell us a little about yourself. Talk about why you took on the foundation, how you got there, uh, and some of the work you're doing and why this cause is relevant to you.

Joe Holman:

Okay. Yeah, let me get into it. I have a little story behind it. You know, I know somebody very close or could be me, um, who was diagnosed about five or six years ago with uh, lupus. And this was like 16, 17. And if anyone knows about lupus, it's kind of one of those autoimmune diseases that are a little fuzzy in terms of a diagnosis. Um, time goes on, things changed and they were looking for suspecting that probably it wasn't lupus and a very astute hematologist decided to run a test in 2023 and identified it as VEXAS and I'll talk about VEXAS later. But the journey kind of goes, this is really germane to why I got into it. I then had what's known as VEXAS flare and that kind of put me into the hospital and I went to a major hospital in New York City and they knew nothing about VEXAS.

Joe Holman:

And in fact, the people that were caring for me went on Google that evening to figure out what the heck it was and how to treat it. And they had no idea. And eventually, um, I was able to connect with a research doctor who discovered VEXAS and he provided them with the correct treatment. Uh, originally they were gonna go down one road, which was not a good road, and this doctor was able to jump in and tell him this is the right way to go and the treatment was successful. And I came out and since then he is been able to, you know, maintain myself on a nice stable pathway. But during that time I saw, you know, what a cluster this, you know, the medical profession was in terms of VEXAS 'cause they knew nothing about it. And you never want to go into a hospital when they're Googling what you have to see, what it says.

Joe Holman:

So that was kind of where I got into it. And then if you know who I am, I'm looking at what the doctor has on his website, looking how he's bringing out awareness. I'm like, I go Dr. Beck, you've gotta have, you know, tell more people about it. You gotta get out there and do it. And he goes, well, we have this kind of this, we have this website, but no one's really monitoring it. Um, to get contributions in, you had to mail a check, but no one ever opened up the checks. So that was a real problem. So it was kind of at this defunct foundation and just failed to launch. And he goes, you know, Joe, why don't you take on that foundation? So he just kind of gave us a, so Joe, why don't you do it? Here it is all the paperwork, it's done, all the registration.

Joe Holman:

It just hasn't raised any money or done anything. So that was in April of this year, I became self-imposed president and I was charged to then move forward with it. So that's kind of how I got into it by, you know, looking at what the need is in the, in the medical world, having a firsthand view of, you know, what happens when the people don't, aren't aware what's going on. And then obviously I learned more about the disease and treatment and everything else, uh, going forward and working with, uh, this guy, Dr. Beck, who just wanna say he's the lead scientist. He discovered VEXAS and he's over at NYU.

Brad Caruso:

Oh, convenient. Yeah, right in town.

Joe Holman:

So, so convenient.

Brad Caruso:

Yeah. That's great. I appreciate you sharing that, uh, personal story as well as a little bit more. I know, uh, in our first discussions, I, I never heard, uh, of VEXAS itself. And, and it does, you know, it seems like a, a relatively rare disease, but one that affects many people. Um, so although rare, it still affects a significant number of people. Um, and and you also mentioned a couple important things which we're gonna get into, which is talking a little bit more about what it's like to get thrust into being a, uh, president of a foundation and the fund that goes along with that. Um, but I guess before we get into that, you know, I, I know, you know, you tabled it a little bit, but, but let's, let's talk a little bit about VEXAS itself. 'cause I think it's relevant to understand the work you're doing to understand what the actual disease is and how it affects people. So maybe share a little bit more about, you know, your knowledge on it and what you've learned and your experience.

Joe Holman:

Well, first of all, VEXAS is a terrible name, but it's an accurate, and I mean, VEXAS is like this harsh word that no one really likes to hear. I, which was, they could have come up with something a little.

Brad Caruso:

It's like Lexus Nexus.

Joe Holman:

Yeah, Lexus maybe. Actually this is a funny thing that when I first did this and put it together on one of the web distribution sites for mailing lists, uh, MailChimp, I believe it was, they actually blocked me because they thought it was VEXAS, if you took away the couple of the word, you can get another word on it that looks like I'm putting out pornographic messages. <laugh>, I had to go onto and explain to them, now this is for medical. And they had to go to my website and clear me. So anyway, early on problem, but solved. Um, but anyway, VEXAS is an acronym which you have to look up and it's really much too long for this discussion. But what it is, is, we'll go into how many people are affected. There's about a million people worldwide they estimate they're affected by VEXAS and probably 999,000 of them are not diagnosed with VEXAS.

Joe Holman:

So it's one of those mostly misdiagnosed diseases out there where we ran a survey actually, and it was like 76% of the people were misdiagnosed, initially including myself, where we didn't really get the right diagnosis. And the problem with it is, is what is VEXAS? VEXAS is an autoimmune disease. It's caused by a breakdown in the UBA1 gene. And the UBA1 gene creates this enzyme and this enzyme goes out into the, your bloodstream and it's created inside your bone marrow. So that's the source of it. And it goes out and cleans up all of the, or removes like the fail to launch red blood cells, the immature blood cells, the broken blood cells. And you think about, it's like a garbage truck. It goes along and takes it all out of the blood. And that's what it does. I'm a healthy person and each one of your, um, stem cells in your body create that enzyme.

Joe Holman:

So in VEXAS, a few of the stem cells don't create it and a few more don't create it. And over time, more and more don't create it. And without that enzyme, you get more and more junk piling up in your blood. And if you know about autoimmune disease, that type of thing becomes an irritant. Irritants cause inflammation. And inflammation is the biggest problem we have in the medical profession. And the inflammation then hits different people different ways in VEXAS. And that's the real confusing part. So inflammation could hit you in your lungs and organs, so all of a sudden you, you'll have, uh, issues breathing. It could affect your, um, blood count, though most people do have issues with anemia, with uh, low white blood cell count with low platelets. Um, but it could also come out on your skin look like, um, a skin rashes or one of the, many of the dermatology issues that people are, have these days.

Joe Holman:

You get headaches. In fact, we actually created, um, there's a picture on our website that you could see called the VEXAS Man, which has like 25 different things that can come out and they all mimic a lot of other diseases. So generally speaking, when you have VEXAS you're gonna be diagnosed with maybe MDS, which is like a pre-cancer type of thing. You'll be diagnosed with maybe suspected cancer, you'll be diagnosed with eczema or a bunch of other different types of autoimmunes. And that's what happens. And that's kind of the story behind VEXAS is that because of those misdiagnosis, the people don't get proper treatment over time. And the one thing I failed to mention is that VEXAS affects primarily men over 50. So you're dealing with an over pop- older population and the older population that are affected and identified the time it comes around, because as I said, it's only a few stem cells in the beginning and a few more and a few more and a few more.

Joe Holman:

So say of at 55, you start to get it, it's also not hereditary, it's just pops out of the blue and um, you know, maybe you're 70 years old and all of a sudden now you're getting a VEXAS flare and that's quite fatal when you're very old and then your, the doctor doesn't know what it is. So now those two or three years go by and you're 75 years old and you've been mistreated for those five years, you have might have organ damage and other things happening. So, and that's what gives VEXAS a very high fatality rate. They have, if you go online and believe Google, it's a 50% fatality rate over, after five years of, uh, diagnosis. And that's the resulting of misdiagnosed old people that are very sick. So that's kind of how it works. So I don't know if I've answered your question.

Brad Caruso:

Well, how does, how does it, yeah, so I guess just so dovetailing off that. So obviously, um, you know, one of the challenges with, um, you know, disease diagnosis is, you know, there's multiple diseases in the world and obviously the correct diagnosis leads to the correct treatment. So, you know, how, how does the medical profession right now, and obviously some of the work you're doing is, is with respect to education as well as, uh, you know, funding for, for research and things like that, you know, how what is the current, you know, process for ultimately, uh, ultimately treating it now, is there, is there a treatment? Is there an FDA drug? Is there a, you know, mechanism by which there, there is a proper treatment for it or there is a road to recovery, I should say.

Joe Holman:

It's kinda a hit or miss type of thing that's going on right now. There's no FDA approval, uh, any particular drug. Um, so it's treated for using anti-inflammatory drugs and the number one drug is prednisone. We all know prednisone. Anyone that has an autoimmune disease loves prednisone. It's great drug in the short term, it is quite poisonous over the long term in terms of what it does to your skeletal system, what it does to part other parts of your body. So the problem is that's probably the only very effective treatment for VEXAS. There are other treatments that they try that are considered off the shelf treatments, which I found to be an interesting term, where it's not FDA approved, but they kind of bring it in as a treatment to help reduce the amount of prednisone that you're taking. Like there's a drug, uh, Actemra that um, is out there.

Joe Holman:

There's this AZA chemo drug that's available that's actually very painful in terms of it's like a seven shot course of needles every month over the course of eight or nine months. And they think that perhaps that will bring VEXAS down to almost zero in your blood. But VEXAS was discovered in 2020. So they don't have a lot of research on it. And the only places that they're doing research or significant research is at NYU, NIH, which is the National Health Organization of the United States, and in Paris there's a very large VEXAS research facility there. There's a little bit of work going on at Mayo Clinic and then there's a lot of doctors that are curious about it and doing it on their own. So they have their own little practice on it, but it's not very widespread. So the only real research though, that you'll find, you know, is at NYU, NIH and Paris, there is no cure, as I mentioned, and there is no FDA approval, and they're trying to work up a pathway forward in terms of coming up with what is a successful treatment program that cannot include prednisone.

Joe Holman:

That is the ultimate goal. Keep your flares down, monitor the disease, limit adverse consequences, and really think about the patient's experience their quality of life. There's a big issue where what is the patient's experience and that is how they judge outcomes in terms of certainly from an FDA approval standpoint. Now today, we know that there's several drug companies that are interested in VEXAS. So because we're the foundation, we're able to talk to these drug companies, uh, under NDAs and give them our views on patient experience and patient outcomes. 'cause the FDA is looking for approval to have what is the patient outcome of a drug test. So they do a drug test and the patient outcome has to be that the person's able to run a mile or go to work every day or something positive, not they don't use prednisone anymore, which makes coming up with the patient outcomes much more difficult.

Joe Holman:

However, they're all looking for this FDA approval because they see that the marketplace is much larger than it appears to be. Uh, so you get no real cure out there. Prednisone is definitely the problem. And at the Foundation we're trying to do, one of the things we put together a Facebook page, and this Facebook page has about 400 people on it now. And think of it like Yelp, where people kind of chime in and says, well, I'm doing this, I have this, um, medical, you know, this is me on VEXAS and this is the treatment program I'm having and it's working, or I'm having this problem and I have this flare, or I have this skin rash, is it VEXAS? And they all, everyone kind of gets together and says, well, this is working. And then it gets the popular treatment of the day and you get a lot of people then want to then go to their doctors and say, we want this treatment because everybody on Facebook says to do it. Which I find it kind of novel as a way to generate.

Brad Caruso:

I think it's great and it's dangerous. It's great because people are sharing information on something that there may not be, you know, as you mentioned, there's not, uh, you know, a a uh, formalized cure treatment plan that has been, you know, proven and approved. Um, it's also dangerous because, you know, you're look, you know, as you said, if people are posting pictures of rashes, Hey, what do I have? I'd be like, eh, I don't know, know if I wanna find out.

Joe Holman:

Yeah. Where have you been? What it does though, give people, uh, comfort in terms of being able to talk to somebody about it. Because typically you can't speak to anybody 'cause no one knows what VEXAS is. They're like, oh, really? What is that? Anyway? And then people get tired of explaining what the disease or what the diagnosis is. Uh, but it is dangerous, but it's positive. It serves a purpose. The problem is the studies that are after the metastatic studies on VEXAS involve so few patients, like some of the largest ones have 50 or 60 patients, and I think only 400 patients have been clinically studied with VEXAS. So it's a big difference in terms of there's not a lot of data, not a lot of good raw science. And that's what as a foundation we're trying to build up, is create that runway to create, find what that pathway is for, not necessarily cure initially, but just for a better treatment program that will improve the lives of the people that are suffering from VEXAS until there is a cure.

Brad Caruso:

So Joe, appreciate sharing more information about VEXAS, appreciate sharing some personal information and things that are really gonna help people, especially for those that are unaware. And I think a lot of the, this podcast brings awareness to things like this, you know, this is a, a, an a disease that often goes undiagnosed or maybe is is newer as you mentioned. Um, so you know, obviously in your world you're working for a foundation. You are, um, you know, certainly going through the trials and tribulations of running a foundation, which is certainly not easy to do. Um, maybe share a little bit with us as many of our audience in the not-for-profit world. You know, I was always curious how, you know, how people, uh, run their organizations, what struggles they come across so they can learn from them, you know, as, as you are, um, you know, building this charity from the ground up. Um, you know, what, what did you learn about, you know, running a charitable organization, uh, from this experience? You know, what, what are some takeaways that you have from that?

Joe Holman:

I mean, a real important part of it was governance. And that was the first thing I brought into, uh, the foundation. And I started it by myself. So I was the only one there. So the first thing I did was get aboard and find a group of individuals that shared the same vision that I had. The problem with the original founding of this particular foundation was the people that founded it didn't have the same vision and they fought. And because of that, nothing happened. So by me thinking ahead and looking for people that shared my vision, finding credible people that also had some of the same experiences, not necessarily diagnosed with VEXAS, but understood it or had a family member, um, I was able to create a strong board of people. So myself, I have four other people on the board to help manage the foundation.

Joe Holman:

And I think that's the first step you need to have. And a good tax exempt or a good foundation starts with strong governance. And just like a regular company, you need to have, you know, a structure in place. You need to have quarterly board meetings, you need to have processes, procedures in place to operate the foundation. And the second thing I went into and I think is very important is to create a clear mission statement. What am I gonna do as a foundation? How am I gonna accomplish the goals that I set for myself? What are the KPIs? So how do I measure the success of my activities in reaching the goals that I set for myself, uh, for the foundation? So those are really important areas that I focused on. So we came up with very clear and concise goals in terms of educating individuals, educating the medical profession, helping find a viable treatment programs, helping develop a cure, and by funding research.

Joe Holman:

And that was the crux of our foundation. And then going forward, you're thinking about, you know, research, research is in the millions and millions of dollars through grants, but grants don't cover everything. And the foundation is able to create discretionary contributions to research scientists to actually fill in the holes where grants don't cover. So if they need a particular machine, they wanna run a particular test, they wanna attend a conference, they wanna do something, bring an extra person on the payroll that's not necessarily affiliated with a grant, they can do all of that by having discretionary spending and not necessarily have to include that in a grant program. So recognizing all that, that was sort of how I structured my foundation, how I, you know, working with a great group of, uh, board members, we're able to kind of get out there, create product that can help raise awareness. And if I, if I have a moment, I can go into a couple of our strategies.

Brad Caruso:

I appreciate you sharing. You know, I think corporate governance is often overlooked when people join non-profit boards. And also, you know, people forget that, you know, boards are, are governed, they're not owned by anybody. So, you know, one voice, if there's five board members, there's only one voice and all, you know, four people disagree. Uh, it, it certainly creates challenges in, in finding synergy. So I I really appreciate that you, you know, not only kind of like valued and put in place the corporate governance, you know, the policies and procedures, but also you said, Hey, we need a mission statement. We're gonna get behind and we're all gonna work towards that. And you know, you didn't have to say this, but I bet, I bet the message too is if you're not gonna get behind this, then you probably shouldn't be on our board.

Joe Holman:

That's sort of the way it works. Everyone needs to kind of, I mean, I'm not running, I don't, you don't run it as a dictator. You run it as a collective of everyone's got an opinion. Uh, but yes, you create that mission statement and that is the way we go forward. But the value of the mission statement is then you can think about what can we do as a foundation with the resources we have to be able to accomplish those goals. So one is to raise awareness and improve people's lives that have VEXUS. So the first thing we did was we ran a patient survey, we call it the patient experience. And we got almost, we sent it out to a couple hundred people. We have about 40 people that responded. And we saw a very clear pattern that most of the people there, as I mentioned earlier, were misdiagnosed.

Joe Holman:

They all believed uniformly that had they had a proper testing and testing for VEXAS is simply a genetic test where you can pinpoint exactly whether you have VEXAS or not. It's a binary type of test that they would've been treated sooner, better, faster, and they would've had less side problems. And so coming up with that, we also found that the medical profession doesn't understand VEXAS and there was a lot of misunderstanding of what it is. And there needs to be a lot of education for the medical professionals. And because there's not a lot of information out there on VEXAS, the patients need a lot of information. So what we've done is we've created, or we're in the process of creating something called VEXAS 101, which is a medical resource guide for medical professionals to give them an idea of what to look for in VEXAS, how to do testing and really where, who to call and ask for if they have additional questions within the medical community and for patients,

Joe Holman:

'cause we're not gonna write it at the highest level and give them an idea of what to expect in terms of, uh, treatment options, in terms of what testing is, what their experience is gonna be going forward. And what makes these two types of initiatives interesting is that because of the age of internet, because of the age of social media, it costs very little to be able to go out and run a survey. It costs very little to be able to create a booklet online and publish it online because you don't have the mailing costs, you don't have the publication costs. So with our limited resources, we're able to go out there and affect hundreds of people because with our resource guide, we can have VEXAS patients deliver to the doctors and medical centers that they're working with. And that would be our deliverable method.

Joe Holman:

And they'll then become educated and still on and so forth so that we can have a very large group of people being educated on VEXAS, becoming aware of it at a very low cost. And then we're able to then focus our money on VEXAS research and delivering it to research groups who can use it to really help find a cure. And we want people, it's right, we have pathway to a cure now we're saying we wanna be, you wanna be part of the cure, you know, be part of the solution. And by tying it all together like that in a bow, you're then able to really come up with, how am I making a difference as a foundation- well I'm educating hundreds of people and I can count those numbers of medical centers that I'm educating, I can count the dollars I give to the research centers and I can show the number of lives that I'm impacting in terms of educating patients, not just the medical people on what VEXAS is, and that's our mission statement.

Joe Holman:

And one other byproduct of it is by educating these people, VEXAS becomes more predominant in terms of people's minds. More testing is done. So more people are identified with VEXAS. And then the more people that are identified, the more interested pharma gets involved. 'cause pharma will solve any particular disease if there's enough, you know, return for them. So they'll see a lot more patients have VEXAS, they'll see a lot more business opportunity and they'll invest more money. And because it's such a distinct, easily identified type of autoimmune disease where I'm certain, even though I'm a CPA and this is just my belief, that they could figure out a way to get this enzyme into the blood to clean up the, you know, the junk, the dead or the misfiring, uh, red blood cells so that we no longer have VEXAS in our bodies. So that's sort of, I think we're really on that path and, um, that's why I'm really proud of what I've been able to put together. And I'm proud of what, you know, the support I'm getting from my board in terms of doing this work.

Brad Caruso:

Yeah, we really appreciate the work you're doing for the world. I mean, the first time you and I connected about this, yeah, I I had never heard of this. Um, obviously it affects, you know, people, many people. Um, and you know, raising awareness to these types of causes is a significant element, especially in the case of an early known disease because obviously as you said, um, maybe only a few people know about it, if the medical community isn't very well aware of diagnosing it because it's, it's, you know, so new. And so, um, you know, not in the limelight of, of, uh, some of the other, uh, diseases and issues that are out there. Um, you know, you raising awareness and, and you know, taking that, taking that stand both, you know, resurrecting a charity, right? So, you know, there's, there's multiple layers here. It's not just your educating, but you have to run an organization too, which you're doing plus educating people, plus connecting and, and bringing in dollars to fund research plus, uh, connecting all these people together and, and that it's a very valiant effort that I think a lot of people, you know, don't always see all the work that goes into it.

Brad Caruso:

And, and, and by the way, I I imagine this is probably your volunteer job too, right? You have a day job.

Joe Holman:

I have the day job as you know. But you know, I have to say, one of the things that I really benefit from is the fact, you know, being in business, this is what we do for business. This is how we advise our clients in terms of how to operate a company. Any type of company and a charitable organizations, no different than a not for-profit said we don't have a net profit. We have, you know, a net result from our activities. So I think that that business discipline has really allowed me to do what I've accomplished, what I was able to accomplish. But yeah, this is my weekend job.

Brad Caruso:

It's a lot of work, but, but we appreciate what you're doing for the world. So, you know, in our, in our uh, recent conversations as well, um, you mentioned you had a fundraising event recently, and I, I said I was gonna ask you about it. Uh, you had a, was it a wine event that occurred?

Joe Holman:

Yeah, it was my first time I ever ran it.

Brad Caruso:

Tell us about your fundraising, tell, tell us about your charitable event experience.

Joe Holman:

Yeah, so anyway, um, it was my first one. I made a lot of mistakes. Um, I tried to do like a 50/50 raffle and I couldn't quite figure out how to do like the Venmo versus the you know, just how to get, collect the money from the people. 'cause nobody has money in their pocket anymore. You have to do it through Venmo and I couldn't get Venmo to work. And so anyway, so our 50/50 wasn't really that great. And, um, we did a wine tasting and that went out very well. But, uh, people really liked to drink wine, so I think it went from wine tasting to just drinking a lot of wine. Uh, but we had 35 people attend. I did it at the, uh, Centurion Club in New York City. And they were really gracious about, they gave me a nice discount in terms of the cost of the venue, which was a spectacular venue on the 55th floor with beautiful views.

Joe Holman:

Uh, we had Daniel Boulud, the famous restaurateur, uh, show up for pictures with everybody in the group. So, you know, we were able to have our celebrity chef there and um, it was a great time. It was three hours. We were able to raise over $10,000 after paying, you know, the expenses for the wine that everybody drank. So it was a lot of fun. I think that, you know, next year what I would do differently is open it up to a much bigger crowd. I think that I would need to like have almost somebody responsible for going out and trying to, getting people to attend the event, uh, because it's a lot of work trying to run and set up an event. So, um, I do that at Withum, I do that type of work. I don't do it myself. We have a whole marketing team that does it and I kind of appreciate a lot more of the work they put into it when I ask them and go say, "let's have an event" and I show up and it's all done. I guess there's a lot of work that goes into it before that, so, yeah. But it was really successful as a first one and everyone's hoping to, uh, and looking forward to doing it again next year.

Brad Caruso:

Love it. Love it. Yeah. It sounds like you should be recruiting a marketing professional to your board. That's what it sounds like to me.

Joe Holman:

What we need, <laugh>.

Brad Caruso:

That's what you need, you know, time, treasure and talent work, wisdom and wealth. Those are the three tenets of getting people on your board and need someone who's gonna do the work. Someone who's gonna bring the knowledge and someone who's gonna bring the checkbook.

Joe Holman:

Yes, we need all, well, we need, we have a lot of that, but we definitely need one of the marketing specialists that, uh, probably pretty young that knows social media. 'cause that's another area that I have no idea about it.

Brad Caruso:

Well, let's anyone out there looking to, uh, volunteer on a board this is a great opportunity if you have some, uh, talent with, uh, social media marketing and, uh, assistance. So Joe's looking for someone. Please, uh, please chime in. Let me, um, yeah, yeah. And I guess what, what's, so what, you know, what's next for the foundation. What do you have, uh, what do you have in the short term horizon that, uh, you're looking to accomplish?

Joe Holman:

The big thing is, is VEXAS 101 and getting that out there. Um, we want to get the, we really want to activate, a lot of the individuals wanna participate and they wanna come up with how can I help, uh, the foundation because they see, you know, what the cause that we're trying to support. They're trying, they understand what we're trying to do and they all want to help us. And the easiest thing for them to do is go out and spread the word. So for 2025, we're gonna finalize this book, uh, create it professionally, and then have it, have them go out and distribute it to their rheumatologist, dermatologist and hematologist and say that this is something that you should look for. And if you see these signs test, and these are testing centers and ways to test that, you know, they're accessible to you and payable by insurance. And then the testing actually isn't even that expensive. So our big goal for 2025 is to significantly increase the rate of testing for individuals that have weird types of autoimmune symptoms in line with VEXAS. And if we could do that, we accomplished our goal. And in 2026, we'll probably be working a lot, hopefully with pharmaceutical companies on their clinical trials for FDA approved drugs. And so we'll go, you know, from there. We'll see what happens.

Brad Caruso:

Love it. Love it. So, um, I always like to ask the question and want to, you know, obviously you've shared a lot of your, uh, time with us. You know, you put a lot of energy into this, um, but you're not alone. You know, the world's out there and there's a lot of, uh, people that may not have been affected by this yet or have family members that are affected, uh, currently or may be affected. Um, you know, how, how, from your perspective, currently, how can the public help you? Both where can people obtain more information? 'cause I know you publish a lot of good information as well as how, how do you think, you know, where would you need help from a foundation perspective?

Joe Holman:

I mean, it's, the big thing is spread the word. And if people come across people that have autoimmune issues and they're have an MDS and they have low amenia suggest, have a look at our website, see, do these symptoms align. I mean, we're not offering medical advice, but we're saying, you know, does this qualify something that the doctor should do a $300 test to see if I have access or not? And that's the type of numbers we're looking at. So I'm in the public, um, obviously donations are always great, but I think that from our standpoint, my viewpoint, what's really valuable is having awareness among the medical profession and awareness among the patients that are affected or may be affected by it. Because that type of awareness will then bring money that we can't ever raise and compete against the pharmaceutical companies who will spend millions and millions of dollars to find an FDA approved drug. Now we can grease the wheels and I think the general public by helping again, raise awareness by asking the doctor, did you think about this? If you have these types of things, will help us in the long run, raise that money from the pharmaceutical companies who will be the ones ultimately finding that cure or at least paying for that cure.

Brad Caruso:

Love it. And, and how would someone access your, uh, the website? I know you have a website, a pretty pretty nice looking website. What's the, uh, address there?

Joe Holman:

It's, um, VEXAS.org and there's an email [email protected] on the website. And actually, that email goes directly to my email. Uh, so if you send an email to that particular, uh, email account, I'll get it directly. And I typically respond to all emails within 24 hours. So anyone has questions, comments, they want to help out, they wanna get involved, or they just, you know, wanna learn more about VEXAS, please send me an email to, uh, [email protected].

Brad Caruso:

Love it. Love it. Yeah, Joe, I mean, really appreciate this. I think you, you've shared some wisdom to the world. We've shared some knowledge, we've shared information about the foundation, hoping we can get some supporters out there as well as just, you know, as you said, continuing to share the knowledge and raise awareness to this and, and really just continue to expand on individuals getting diagnosis in this direction that can, you know, ultimately long term lead to further research, finding a cure and finding better ways to service them. And, you know, you're, you're a little modest, you know, for those that, uh, have never met Joe, he is a, uh, very, very fun guy to talk to as well as he's our Sustainability and ESG practice leader. So, you know, on top of his side job here, which is volunteering, he is also very committed to other verticals in the world that really do help the world. And so, you know, I would, I would define you as a true civic warrior from that perspective, and, and really appreciate that you've, uh, spent the time with me, spent the time to share this message, and, uh, really appreciate you, uh, joining the show today, Joe.

Joe Holman:

Thank you, Brad, for having me. Appreciate it.

Brad Caruso:

No doubt, no doubt. And warriors out there, thank you for listening. Please subscribe and meet us right back here for another episode of Withum's Civic Warriors. Thank you all and have a great day. Bye everyone.